It is impossible to avoid the outrage and scandal of the News of the World if you were in the UK this week. One media organisation went too far in its pursuit of sensitive data by tapping phones, and there have been hourly revelations since then, revealing a much greater system problem. Has the media lost its way? Yes it has. The “big scoop” has become more important than respect for individuals and their lives, and the right to know has trumped the right to privacy.
As the scandal crosses the Atlantic and more people lose their jobs, the last few days made me reflect about analogies between the media and medical research, and possible lessons for EBM. Like the news headline writers, data is the major part of what medical research is about as well. It is sensitive data because the content is health information of patients. Thankfully, medical research has to go through multiple levels of ethical review before it is carried out and perhaps the rather lame Press Complaints Commission needs to be replaced with a proper code of ethics for journalism and a body that can enforce it.
The history of medical research has had plenty of ethical issues and scandals which have largely led to improvements in guidelines and the way in which research is conducted. Perhaps most importantly, the involvement of Nazi doctors in unethical research during the Holocaust led to the establishment of the Nuremberg code: ten principles of ethical conduct in medical research in 1949. The World Medical Association developed the Declaration of Helsinki to guide the medical research community regarding human experimentation. But scandals still continue to happen. The impact of Andrew Wakefield’s bogus Lancet paper about MMR has led to huge consequences for childhood immunisation across several countries. Conflicts of interest in research and clinical practice have led to inappropriate regulation of medical devices.
Medical researchers have the privilege of working in fields where their findings can genuinely impact human lives, and ethical research can be done in every area of medicine to make treatment and the patient experience better, even in end-of-life decisions in the intensive care unit.
As a researcher with an interest in epidemiology, a lot of my work involves using patient databases to formulate and test hypotheses. The aim is not “to publish or perish” and get as many papers from the data as possible, and nor is it financial reward. We as researchers should always remember why we are doing what we do: to discover more about health and disease in order to improve outcomes for patients.
